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It’s okay to like marmite

Image description: Rebecca, a white women with long brown hair, sits on a garden step surrounded by plant. She is wearing a knee length dress with green , red , pink and orange flowers on it and a colourful beaded necklace.

Dear Reader

Lately, I’ve been thinking about the way thoughts, ideas, views can change and oppose perspectives and reflections and/or how perspectives can swing between the two.

I used to think that was a bad thing. That how could we be deemed unreliable if we changed our mind like the weather? That it made whatever we said invalid. As someone who has a track record for changing my mind and feeling guilty to have this trait, to say that this is actually okay is actually quite liberating and proud moment for me. There are thousands out there with a similar mentality to me and we often get branded as wishy-washy, uncertain and sometimes, as my family cat Queen T is literally and it’s one of the many things I love about her, a sit on the fencer (though with my balancing being one of my tricker skills, it’s not as quite a mundane task as one might assume). I would like others like me know that hey! You, me, we are completely fine, we don’t need to change.

I’ve played with these thoughts for a while now, with various observations and experiences leading to these reflections. I first shared my ponderings on uncertainty on my Instagram after a trip to Florence in April.

I was between two extremes. The first between fury and frustration at the inaccessibility and the constant excuse being given that it was an old city. It’s not about eradicating history, but it’s about making accommodations and edging towards inclusion and not maintaining historic believes that disabled people aren’t active members of society.

Yet on the other hand, I was struck by the superb detail of the old around- can I really say that I want a fairer world for disabled people but still marvel at the things that disables us?  Or is this me with my learnt thinking that you can either be one or the other, not both. That things are either black or white, not grey. That like marmite, you either love it or hate it, there is no in between.  But perhaps you can be both. Perhaps things can lie in a grey area. Perhaps you can like marmite. Perhaps. Perhaps. Perhaps.

These reflections extended further when I saw the first ramp on the second day. The joy, the relief, the unheard welcome.  It had me feel that sense of gratefulness that I know I shouldn’t feel. Grateful to access a public building, grateful that simple rights are being met? Does this reading this sit well with you? How often to you hear non-disabled have thankfulness for entry in to such places? Reader, it’s more likely that the number of steps will get criticized. Yet in this moment, I felt so happy that I could explore with ease and go about my day.

In recent weeks, my thoughts have become more stretched. I want to thread carefully about the wording of this because I still don’t know where I sit with it but as some of you may know writing for me is my way to try and makes sense of things somehow.  And it revolves thoughts around independence.

For the past few weeks, I’ve experience quite debilitating back muscle spasms which meant I needed even more help than usual. Like many, I have learnt through the years that it’s okay to receive help. It certainly does not make you lesser- everyone has different ways of doing things and personally I love working as part of a team. Obviously, though it was a little frustrating as I just couldn’t get on with things.  As I’m slowly starting to get back to some kind of routine and relieved to get some of my independence back.

I sometimes feel like when we celebrate independence, it can feel like we’re advocating for being as non-disabled as possible, writing disability off as something bad. But it’s not about that- it’s about feeling and doing what is comfortable for you, and simply doing what you need to do for you. As I can now take a few steps with a bit of ease, my mind springs to What would Inspiration Porn say? A thought that tries to suppress my joy. Something that says I’m doing something ‘in spite of my disability’, with the toe curling saying if a disabled person can do something, you certainly can. But it’s more about… getting back to my normal, what’s in my scope. So I want to reject this thought. I want and need to celebrate about feeling good again. No one should take that away from you, so don’t let them

The point of this post is to say it’s okay to be on both sides of the coin. You don’t have to have a fixed idea on something, it can change, it can be fluid.  You don’t have to grip firmly to one idea

It’s okay to like marmite

All my love XX

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Feeling Top Trumped

Rebecca a white woman with long brown hair. is sitting on a sofa holding a box of The Simpsons Top Trump cards
Image description: Rebecca, a white woman with long brown hair, wears a red blouse, under a green tank top with little red flower heads and red hearts on it. She also wears khaki green jeans and pink socks. Rebecca is sitting on the sofa holding a box of The Simpsons Top Trump cards

Dear Reader,

TW: Internalized Ableism

I’ve lost count of the number of times that I have been put in to an ill-fitted box, metaphorically, that is covered in tape with red writing that spells out the word ‘fragile.’ ‘Unable,’ ‘unequipped,’ ‘incompetent’ would also be words associated with this fixed, rigid, cubed space.  A space that does not mirror, in the slightest, a disabled life. A space that has been orchestrated around a skewed idea of disability. It feels that when you are disabled you have to work twice as hard to be seen, to have some kind of value. Though I am also aware that I am part of one marginalised group that feels misunderstood, to say the least, and can play a huge factor in how we are ranked in society.

I loved a board or card game as a child (I still do now). It sparked a moment of shared fun and joy and, to exercise that competitive muscle. One of my favourite games was Top Trumps. That card game for two or more players, where cards have rankings against a set of qualities and whoever has the highest ranking on the quality in question wins.

I had a pack of Top Trumps based on The Simpsons and my most loved character card was Maggie Simpson, the youngest of the Simpson family, who appears as a yellow cartoon character wearing a sky blue long- sleeved dress with a matching bow in her spikey blonde hair and, as ever, sucking on a tangerine-coloured babies’ dummy. Coincidently she also got the highest ranking for ‘Most loveable’ with a 10.

Image description: a collection of Top Trump cards faced down on a table, with card of Maggie Simpson faced up. She is a yellow cartoon character wearing a sky blue long- sleeved dress with a matching bow in her spikey blonde hair and is sucking on a tangerine-coloured babies’ dummy. Beneath this picture is a set of qualities and values ‘MOST LOVEABLE 10’  ‘SMARTEST 25 ‘FATTEST 25’ ‘BIGGEST NERD 174’ ‘GREATEST ANARCIST 3’ ‘WALK OF FAME RATING 18’.

As kids, Top Trumps was just about getting that higher number and winning that card, playing with innocent, untarnished and pure acts-generally speaking. Though such a focus on winning a game seems so trivial now, Top Trumps is a game played every day with more intensity and stakes that are far much higher .

Rebecca, a white woman with long brown hair, is holding a bunch of cards to her face
Image description: Rebecca is holding a bunch of Top Trump cards up to her face.

We might not be sat in a circle, looking into the eyes of others trying to anticipate the numerical values that are before them, but we are still eager whilst also anxious to find out about what we’ll win or lose. Numerical values are swapped for our demographics or status. The reward of a piece of A6 sized card is swapped for opportunities, entitlements and ultimately our place in society.

I know that as disabled person, the immediate utterance of the word disabled automatically means that, in one way or another, my wants and needs will get judged on importance and worthiness and perhaps pitted against someone that perhaps doesn’t have such things.. For example. when it comes to getting my voice heard and having a seat at the table or having responsibility distributed or accessing education or employment, I know that as a disabled person I may not be the desired candidate. This means that I know I may lose out to those who are non-disabled, as it may feel “more convenient” or “less trouble” or “may require too much work” in terms of putting access and support in place for someone like me. I am left there wondering what is wrong with me? Why am I not good enough?

In this real-life depiction of Top Trumps, the quantity of cards that are in my hand therefore shrinks. This is before I hand over cards based on my identity as a woman, because society, as much as it has progressed, is still very much a man’s world. Yet I am privileged to be holding the cards that I have due to my white skin, my heterosexuality, and being cisgendered.

As a disabled individual there are those cards that I might win back, cards that I would rather loose. These ‘victories’ are funded by that ever-nauseating inspiration porn. Yes, I mean when cards are thrown my way just because I got out of bed this morning, or am seen going down the street, or have a smile on my face “Even though life must be oh so hard.”. These wins feels like I am also losing. Funnily enough though for those who have lost this card, they perhaps feel like they have won because they have done a good deed. It’s like being a kid again when adults let you win a board/card game just because. These wins therefore have no substance yet, I like, many in my position, am made to feel that I should be grateful for the cards or more accurately this type of praise given.

The term of worth and value needs to be deconstructed. We need stop being surface driven, ranking each other based on who we are or what we have or have not got and stop making others feel unworthy and that they need to escape and abandon who they are. We need to stop being guided by the myths and legends that were formed long ago about certain demographics. Let’s put our cards down and not be governed by the topsy turvy societal structure and start seeing and hearing each other. Let’s stop pitting ourselves against each other. Let’s leave competitive streaks only to rise around actual board and card game tables.

All my love XX